DDW: Doctors/Patients Not Following
Through on Hepatitis C Screening, Diagnosis and Referral
ANN ARBOR, MI -- May 22, 2001 --

People who might be infected with the potentially fatal hepatitis C
virus are not getting tested early or often enough, possibly because neither
they nor their primary doctors are raising the issue, a new University
of Michigan (U-M) Health System study finds. And even if they do test
positive for the virus, they may not always get referred for specialty
care.

The study's results suggest an urgent need for better awareness among
both physicians and the public about the risk factors for hepatitis C.
The authors say better mechanisms may be needed to help busy doctors identify
those at risk and ensure they get tested while there is still time to
refer them for treatment - treatment that may help them fight the infection
and stave off liver failure.

The new study finds that among a sample of the 2,348 hepatitis C screening
tests ordered by primary care physicians, only a quarter of the tests
were ordered because the doctor identified the patient as having a potential
risk factor, such as intravenous drug use or a blood transfusion before
1992. Another 65 percent had the test because of prior liver problems
or because routine blood tests showed elevated liver enzymes. Ten percent
of patients requested it.

Of all those tested, 10 percent turned out to be infected, and about
half were referred to a specialist for follow-up. Meanwhile, almost half
of the 57 patients who tested positive and went on to have a liver biopsy
turned out to have significant liver scarring, either cirrhosis or fibrosis,
suggesting a longstanding infection.

"Primary care doctors are the gatekeepers of the health care system,
and it's crucial that they catch this infection early by asking about
risk factors, ordering tests, and referring those who test positive for
evaluation and treatment," says Dr. Lok. "And since primary
care is a two-way street, patients need to know whether they might be
at risk, and volunteer that information to their doctors so they can get
help and find out how they can keep from spreading the disease."

Adds Dr. Shehab, "General physicians are being expected to screen
for more and more diseases, and our results show we need to help them
do that in a way that's both efficient and effective."

The study is one of the first of its kind, based on actual medical records
from patients at several primary care sites. Drs. Lok and Shehab have
also performed surveys of primary care physicians, and found that many
reported they thought they did a good job of assessing patients for their
hepatitis C risk and referring them for treatment.

The new study did not examine why a higher percentage of patients weren't
tested based on risk factors, or what reasons - such as a patient's age
or other health problems - might have kept an infected patient from getting
a referral. The study also only reflects patients who had a hepatitis
C test, and not those who weren't asked about or didn't offer risk factor
information.

"Ideally, early diagnosis can be made if doctors ask about hepatitis
C risk factors and patients answer honestly," says Dr. Lok. "We
shouldn't wait until patients have symptoms, or until the infection has
progressed, as treatment is often more effective if it's begun earlier."

"In addition, there are important potential benefits to the public
at large of early diagnosis," Dr. Shehab adds. "These include
the fact that hepatitis C patients may change behaviors and therefore
reduce the risk of transmission to others, and the possibility that they
may modify practices such as alcohol consumption that may alter the disease's
progression."

Eighty percent of people infected with hepatitis C, either in the initial
acute phase or the long-term chronic phase, have no signs or symptoms.
Only blood tests for antibodies against the virus, or for the virus' genetic
material, can show for sure that they're infected. Infections can go undetected
for years or even decades before symptoms begin, even while the liver
is slowly destroyed. In the current study, the percentage of patients
whose biopsy showed significant liver scarring was high - at least 10
percent of all those who tested positive for the virus.

As many as 3.9 million people in the United States may have the hepatitis
C virus, and an estimated 2.7 million of them have chronic infections,
putting them at risk for liver failure.

Both professional societies and federal agencies have developed guidelines
to help doctors find and treat infections. But public health authorities
know that many infections aren't spotted. There is no vaccine against
the virus, and even advanced treatments are only moderately successful
in slowing the pace of the chronic disease's progression toward either
liver transplant or death.

The stigma attached to some risk factors may play a part. Intravenous
drug use, risky sexual practices, cocaine use and tattoos from dirty needles
are all common means of transmission. Dr. Lok notes that patients need
to volunteer information about these behaviors to their doctors - even
if it has been decades since the last time. And doctors need to act on
that information.

Meanwhile, other behaviors that don't carry a stigma may still put people
at risk of infection: occupational exposures in health care workers, long-term
dialysis, or having received a blood transfusion or organ transplant before
1992, when surveillance of the blood supply improved.

Once a person tests positive for hepatitis C, further tests and biopsies
to determine the subtype of the virus, whether the infection is active
or dormant, and the extent of accumulated impact on the liver, are often
needed to help guide treatment. This often leads to specialized treatment
by those with advanced training in liver disease. For example, Dr. Lok
is leading a major national study of a combination therapy that uses a
new form of interferon and an antiviral drug.

The question of why only 57 percent of hepatitis C-infected patients
in the study were referred to specialists puzzles Dr. Lok and her colleagues.
They plan to look at the question prospectively, to see if race, gender,
medical, insurance or other factors are at work. They also hope to explore
ways to add screening questions about hepatitis C risk factors to the
questionnaires that patients in primary care clinics are often asked to
fill out when they arrive, or to find ways to use technology to make that
process more efficient.